My GBS by Gordon Stephenson
October 10 2005, and my 81st birthday. Happy, still farming (after a fashion) with a 2 year old steel hip, keen tramper, etc etc. Then a few days later, a chesty cough, and a few days in bed. Recovery after a week.
THEN, on Friday morning 21st October, I wobbled when I got up to go to the toilet. I did not pay much attention. On Saturday, our Auckland son and 4 children came to visit. I wobbled again. My concerned son said ‘off to the doctor’. The Saturday evening duty doctor in Tokoroa tapped and poked and said ‘stroke’. More tapping. ‘Hang on, I think you have GBS’. The one doctor (in the Waikato ?) who could have diagnosed so quickly, as he had had it himself many years ago.
So it was off to Waikato Hospital. I was soon away with the fairies, but I learned later I developed severe pneumonia, my heart stopped twice, I was in and out of Intensive Care and High Dependency, and totally immobile. No breathing (a trachy), no voice of course, eyes shut (eyelids malfunctioning) no movement except for the ability to move my left hand and forearm a bit. And of course in that weird state of being unable to communicate.
Awful for my wife Celia and daughter Lynn (who lives near us). Far worse for them than for me. Daily trips to Hamilton, an hour’s drive away. And then to sit beside an inert body with tubes and wires in it from every aperture and some.
For me, tests galore. Medical students inspecting a rare medical case study. Lumbar puncture by a ‘learner’. I knew because I could hear the chief directing her, but her (I think) Chinese hands infinitely gentle. Not so gentle were the electric shocks. As a farmer I know all about electric fences, but to have one’s neurologist whom I could not see prodding my face , and I suspect the rest of my body but I had no feeling, and experiencing what I expect a Taser does to you, it was not fair. Months later I had him on about this. ‘You bloody sadist’ and he just laughed and called me his Lazurus patient.
Being unable to ring the ‘Help’ button for a nurse was eventually overcome by using a sort of pressure sensitive small balloon which I could wobble my left hand on to. With the family, we worked out a laborious communication system. They had a paper pad and pencil. I still could not open my eyes, so they held my left hand (why the left all the time ?) and recited the alphabet. When they reached the letter I wanted, I squeezed and they noted it. And on to the next letter I wanted. This was not shorthand ! And how to know the end of a word, or a spelling mistake ? And for some reason I kept using long words and complicated sentences. Patience was indeed a virtue.
Strangely, I was always optimistic except when I had a relapse and my mouth was re-filled with tubes, and I thought ‘blow this, I have had enough’ and signaled to the family ‘pull the plug’ But next day, one of the doctors came to see me, bless him, and told me not to give up but to fight back. It was all that was needed.
Then followed the slow recovery. Frankly, it was at times hilarious. Trying to raise me vertical with hoists and pulleys, and my poor old body hanging below like a sack full of water. Trying desperately to raise a knee 2mm off the bed.. My first words after the trachy was taken out, which sounded like a frog.
But such kindness. One unforgettable incident when still in the Intensive Care Unit. One of the nurses said ‘what are you really looking forward to ?’ I said (I don’t know how as my trachy was still in !), ’seeing grass, and trees with the sun shining through leaves’ Next day, I was transferred from my bed to a sort of LazyBoy chair, and with a bevy of nurses around, was wheeled out of the building and onto a lawn and under tree in the sunshine, complete with all my tubes and whistles. I nearly wept. And at that moment, Celia and Lynn and my sister arrived to visit me and saw this strange group around a man seated like a potentate on the lawn, and said ‘that must be Dad, only he could persuade the nurses !’
So began the slow re-learning of the simplest body functions. How to turn over in bed, how to swallow, how to stand holding on to a rail, how to use a wheelchair, how eventually to brush my teeth myself or use a towel. Being told to get on the floor, and back up onto a bed. Impossible. And, over the weeks with incredible care from physios and OT’s, how to walk. Walking is so complicated and I now look with awe at toddlers as they learn so easily. But they can fall and just get up again. I could not afford to fall.
Then my own wheelchair, and the family able to wheel me out for an expedition down to Hamilton Lake. And lunch in a café.
I went to hospital on 22 October 2005 and came out on 13 March 2006 from the wonderful Ward 58, the Rehab unit, such a happy positive place. I came back to a home prepared for me, with rails in all the difficult places, put in as a gift by a friend. Our local OT had come out and carefully marked where the rails should go. Our house has 4 layers each separated by 2 steps, so I could not go that way by wheelchair. Luckily our bedroom has double doors leading to the lawn. So morning and night Celia would wheel me down, or up, the slope. A manful effort. Except, one rainy evening, we got to the bedroom door, we somehow tipped me out, and I was stuck with bottom half out in the rain, and barely able to wriggle forward, let alone crawl. Some laughter later, we hauled me into the bed, wet but none the worse.
The bliss of a bath ! With a rope fixed to a beam, and various OT seats and stools, I could, with help, get into the weightlessness of a deep hot bath, and luxuriate. The privilege of using a ‘disabled carpark’. The concern of people in the shops, or cars when crossing the street when they see an old fella with shaky pins. Finally walking a kilometer, then for an hour, albeit slowly. Milestones of recovery.. A year after the onslaught of GBS, I could do most things myself, dispense with crutches, and walk with two Leki sticks. Our local nurses, OT and physio came regularly, to check I was not slacking with my exercises
Now, after 30 months of recovery, I claim to be almost normal. I still have almost no balance with my eyes shut or at night. I hate standing and sit whenever possible. I would rather walk. My capacity for sleep is infinite. I’m sure I look totally drunk when walking. My legs feel stiff and feet are tender as if walking on big blisters. At times I still forget to swallow properly and cough and splutter. My typing takes almost as long to correct as it does to type. How the bank recognizes my signature is beyond me. But I can drive OK (I took a practical test) and ride the quad bike, and even (recently) was again able to stamp in an electric fence standard without wobbling over. And go to meetings without falling asleep, and take part in life again.
Now, approaching 84, what I find fascinating is that I have forgotten what ‘normal’ is, so just concentrate on what I can actually do. And I am eternally thankful I got GBS where one tends to get better, and not a condition that will inevitably deteriorate. But those old nerves seem to lack any urgency in their task of rejuvenating.
Well, it has been something of an adventure, and still is. It would have been impossible without Celia and Lynn and other family members and friends. But life is very good.